Debate Over Alzheimer’s Treatment Decisions

Imagine being diagnosed with Alzheimer’s disease. A doctor evaluates your individual requirements and risks, then suggests a tailored treatment plan aimed at enhancing both your lifespan and quality of life. But here’s a thought: who ultimately decides if you get that treatment? Is it you, your family, your doctor, or perhaps an insurance company that knows nothing about you?

For a lot of Americans, the answer seems clear—it should be a joint decision between doctors and patients.

But, rather frustratingly, in many situations, the final say isn’t in their hands. It’s often the insurance company that calls the shots.

A recent poll by the Market Institute, along with insights from President Trump’s pollster Fabrizio Ward, reveals some startling statistics: a whopping 89% of registered voters believe that doctors frequently opt not to prescribe Alzheimer’s testing or treatments because they anticipate that insurance companies won’t cover them, leaving patients unable to pay out of pocket.

Many voters are picking up on troubling trends. Alzheimer’s patients have been in the news, celebrating new treatment options, only to find themselves facing sudden insurance denials.

For instance, one patient, Lori Baetz, initially thrived on her treatment. Unfortunately, after her interview ended, her health deteriorated, and she started getting lost in her own neighborhood. Dr. Carla Leahy, her neurologist, pointed out that patients like Lori are frequently denied insurance coverage—an issue that’s pervasive nationwide, including in places like New Jersey and North Carolina.

This kind of denial and delay is angering thousands of Americans. Surprising, but nearly 41% of American youths described the killing of UnitedHealthcare CEO Brian Thompson as “acceptable.” During a Market Institute focus group, participants described insurance companies as entities that, “just want to wear you out… so you just give up.”

I genuinely understand the frustration that many feel. But it’s important to recognize that insurance companies often operate under rules established by the federal government.

The real issue here seems to stem from government policies that inadvertently compel insurers to delay or deny coverage.

One of the most evident examples is the Biden administration’s Medicare policy known as evidence-based reporting.

After the FDA approved a new wave of Alzheimer’s treatments, the Centers for Medicare and Medicaid Services introduced restrictions on Medicare coverage, contingent on patients participating in government-approved research and meeting additional criteria.

This decision added an additional layer of bureaucracy, despite the FDA affirming the treatments as safe and effective.

Such a decision sends a concerning message throughout the healthcare system. If Medicare, the largest healthcare payer in the U.S., deems the FDA’s approval insufficient, Private insurers are likely to follow suit.

When Lori’s insurance denied her coverage, even after her positive response to treatment, the company justified their position by labeling her treatment as research/experimental. When Medicare treats approved treatments as experimental, requiring extra documentation and enrollment, insurers can point to government policies when declining coverage.

This detrimental policy only amplifies the economic and emotional toll of Alzheimer’s disease.

The lifetime costs incurred while caring for someone with Alzheimer’s can soar to over $400,000, with around 70% of that burden falling on family members through unpaid care or personal expenses.

On the flip side, Medicare spends approximately $174 billion annually, while Medicaid adds another $72 billion, particularly focused on long-term care. As Alzheimer’s cases are expected to double in the coming years, these costs are bound to rise.

But there’s a silver lining—effective treatment can help Americans retain their independence and stay in the workforce longer, possibly mitigating these rising costs.

Research from the University of Southern California Schaefer Research suggests that early treatment could extend life expectancy by up to a year, cut the average time spent in nursing homes by nearly two years, and reduce healthcare expenses by about $48,000 per patient. This means more individuals can maintain their independence, easing the caregiving burden on families and allowing more workers to stay economically active.

Each patient who maintains their autonomy and delays the need for full-time care represents a significant human and economic success.

If there’s a desire to reduce insurance denials, it’s essential for policymakers to reconsider the incentives they create.

The FDA should be the sole authority on whether treatments are deemed safe and effective. Once a treatment is approved, the Centers for Medicare and Medicaid Services should refrain from adding barriers that prompt insurers to do likewise.

Until these circumstances shift, Americans will continue to hold insurance companies accountable for actions encouraged by government policy.